Jack Trewin’s sudden death sparks push for epilepsy awareness

Like many 16-year-old boys, Jack Trewin loved fast cars, mountain bikes and his woodwork class.

The Hobart teenager died suddenly last month, leaving behind his heartbroken parents, Penny Flanagan and Simon Trewin, his siblings, and a school community he was much loved by.

“His massive thing was cars, he’d go around the caryards and sit in Porsches,” Ms Flanagan said.

Jack had epilepsy and autism.

The exact cause of death is still unknown.

Half of all epilepsy-related deaths are sudden and without a known cause.

“He died in bed,” Ms Flanagan said.

“I found him in his room.

Ms Flanagan wants to raise awareness of epilepsy and the services that are available to help those living with it, as well as their families.

Penny Flanagan with her sons Gus, Max and Jack.(Supplied: Penny Flanagan)

‘It started as night terrors’

Jack wasn’t diagnosed with epilepsy until he was 13.

“It started as night terrors and they kind of evolved later, through his early teens,” Ms Flanagan said.

“He ended up having full-blown seizures ranging from anything from an absent seizure where you stare off into space, down to basically having a fit on the floor.

While medication helped get the seizures under control, his parents couldn’t always monitor his condition when he went to bed.

A boy wearing a cap holding a yellow 'L' plate.
Jack was pleased with himself after getting his learner’s licence.(Supplied: Penny Flanagan)

More research needed

There are 800,000 Australians living with epilepsy, including 20,000 in Tasmania.

Epilepsy Tasmania estimates one in five Tasmanians are affected by the condition through friends and family.

For those with epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 1 in 1,000 adult deaths per year and 1 in 4,500 deaths in children.

SUDEP occurs most frequently at night when in bed or during sleep, and isn’t due to a physical injury from a seizure.

It is an area that epilepsy groups want more research on.

Jack’s final ride

Due to COVID-19, only 50 people were allowed to attend Jack’s funeral.

It was a world away from Ms Flanagan’s wedding in January, when Jack walked her down the isle and gave her away.

Ms Flanagan said it was heart-wrenching for his close-knit school community to not be able to attend the funeral.

“There were so many kids at school who wanted to say their goodbyes,” she said.

To honour his love of cars, dozens of Porsches escorted Jack to the crematorium, and the funeral included music from the movie Fast and the Furious.

In lieu of flowers, the family called for donations to Epilepsy Tasmania, and his grade 10 peers also raised thousands of dollars.

The money will go back to families living with epilepsy, and help fund a new telephone service to support people during COVID-19.

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‘There is a condition where epileptic children just pass away’: Mother shares experience of losing 16-year old son during the coronavirus pandemic
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Reaching out during COVID-19

Epilepsy Tasmania chief executive Wendy Groot said like most vulnerable people in the community, COVID-19 had been a challenging time for people with epilepsy.

“People with epilepsy already feel that they are isolated and that they are physically and socially distanced from people,” she said.

“The impact of the COVID-19 virus has meant that has increased.”

A boy wearing a cap holding a knife and fork
Steak was one of Jack’s favourite foods.(Supplied: Penny Flanagan)

Ms Groot said many health services were now done through video or phone, and specialist neurologists weren’t able to visit Tasmania.

“People with epilepsy have trouble with moods and memory and communication,” she said.

“Doing it through a telephone means they aren’t getting the best health outcomes they require.

Epilepsy Tasmania has set up a new telephone service to make contact with patients to ensure they can access to the services they need.

“We’ve been actively calling people when we wouldn’t normally be speaking to them,” Ms Groot said.

Part of the money raised in the wake of Jack’s death will help fund the service, and Ms Flanagan hopes more people will become aware of the services they can access through Epilepsy Tasmania.

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